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Monday, December 29, 2014

As another year winds down, I find
myself reflecting on the past year, and the years before that, and how I’ve
arrived at this time and place. Have you ever stopped to ponder the small
events that shape our entire lives? The
positive influences: a chance meeting, an unusual connection, making the right
choice, joy, success, birth, and random acts of kindness. Life isn’t all smooth
traveling. We have negative forces at work: accidents, disease, heartbreak,
betrayal, deceit, failure, and death.

Everything that happens in life
shapes who we are. The choices we make determine the quality of our very
existence.

This year the broken road has
climbed some high peaks and traversed through some deep valleys. I’ve lost
loved ones this year. Most recently a cousin to a lingering illness, a niece to
an unexpected death, and today my sister-in-law’s mother died from Alzheimer’s
disease.

Life is tainted with a special type
of sadness when a loved one is afflicted with dementia. Even with our small
successes in Alzheimer’s legislation, this awful disease is still without a
cure or effective treatment.

Alzheimer’s changed the course of my
life. It took away the man I’d shared my life with, changed the color of the
sky, and the taste of the air. It left a hole in my universe. Snapped away all
my plans and dreams and left me with a different destiny.

It’s hard to believe that Jim died
nearly ten years ago. I’m still sorting through a lifetime of mementos, and my
heart breaks when I find one of Jim’s favorite shirts, a guitar pick, an old
pair of glasses, an outdated drivers license—things that he once touched, used,
or cherished. Old pictures memorialize slices of our lives, and stacks of
videotapes provide a record of vacations, jam sessions, or a mundane day with a
conversation long forgotten. The loss ambushes me from time to time.

But just like others who lost loved
ones, I found more strength than I ever suspected lurked within me. Basically,
when life crumbles, you have two choices: quit or move on. I like to say that
I’m not a quitter so the second choice was a natural one for me. I conquer
another piece of the broken road. Life goes on and life can be so good, sweet
with many more smiles than tears.

I had some major life changes this
year—retirement, marriage, living in a different home, publishing two books,
and watching time blur by and recede into the past. I have much to be thankful
for as most of my family keeps on keeping on without missing too many beats.

When I think about life and all the
“stuff” I’ve accumulated—toys, possessions, collections—it becomes clear that
the important things in life can’t be bought. It is the intangibles that make
life worth living: attitude, love, happiness, faith, hope, family, health…

To move forward in life, I can’t
keep looking back at what once was, but must anticipate what is yet to be.
After all, everything that happened along the broken road is imbedded in my
memories, and seeped into my DNA. I’m comfortable with who I am and where I am
at this stage of my life.

Today at the post office I saw a
former co-worker. In fact, he was picking up the company mail. “Looks like
retirement suits you,” he said.

“I love it!” I agreed. There’s
something totally liberating about choosing what to do and when to do it. Oh, sure,
I still have commitments and appointments that I keep, but most of my day is
what I choose it to be.

“What are your plans for today,”
Harold often asks me when we first wake up. He is a planner, I’m a seat of the
pants type of person.

“I plan to drink this cup of coffee,”
I say.

“Then what?”

“Drink another cup.” One thing I
know—until I’ve had my coffee, I don’t want to think about the day beyond this
moment, much less plan it. Besides, instead of spending time and energy to make
plans, I’d rather be moving on down the road toward my destiny.

Monday, December 22, 2014

I’m an optimistic person and would
classify myself as happy—at least most of the time. Yet some days you get an early
morning phone call that seems to just make the earth tilt a little different. I
got one of those phone calls Friday morning.

I turn my phone’s sound off at night
because the whistling, dinging, and notifications interfere with my sleep. Once
I discovered the alarm still rang with the sound off, I just automatically turn
it off at night. So when I heard the phone buzz, I picked it up trying to
figure out why my alarm was silent. It wasn’t the alarm malfunctioning, it was
a phone call from my son with bad news.

My forty-seven year old niece
Krystal had passed away in the early morning hours. Shocking, unexpected news.
Devastating news. The kind of news that can suck the air from your lungs. A
cherished family member gone. Just gone. Forever from Earth.

My sorrow at losing a beloved niece
cannot even compare to the crushing blow this was for her parents, husband,
children, siblings, grandchildren, and those privileged to be in her inner
circle. It was a big circle because Krystal had a loving heart and a gentle
nature.

Today was her funeral. Three days
before Christmas, and what? The hap- happiest time of the year? No. Hundreds of
people gathered together to remember Krystal, honor Krystal, and to lay her to
rest.

As the photos on the PowerPoint transitioned, we saw Krystal as a little girl, a teen-ager with big hair, in a beautiful white dress on her wedding day, cuddling her baby, with her family, turn around, turn around. Krystal with her little smile, sparkling eyes, and quiet sense of humor. I had watched her grow up in real time and the photos were fast-forwarding through the years.

When most people can’t find time to
join one church, Krystal belonged to two. One a traditional Lutheran Church and
the other a more modern non-denominational church. Both pastors, one
traditional, and the other quite unconventional both spoke of the woman they
had grown to depend on and cherish.

After words of comfort and prayers,
we queued up with a long line of cars to go to the cemetery for the interment. After
the long drive, we huddled beneath umbrellas as the rain began in earnest,
shoes sinking into the soft earth. We shared umbrellas, coats, hugs, and sorrow
as the rain beat down and we prayed the Lord’s Prayer.

We went inside the church to share a
meal and comfort each other. To share the sorrow. As I talked to Mike, he said,
“You know what it’s like, Aunt Linda.” I do know what it’s like to lose a
beloved spouse. It’s like losing part of yourself. An unfillable void. “There
are no words,” he said. I couldn’t agree more.

I know the pain of losing a parent,
and the crushing blow of losing a brother. I do not, thank God, know what it is
like to lose a child. We all want our children to outlive us. I can’t even
imagine the heartache a parent feels at a time like this.

There’s no amount of optimism that
can take away the sadness. Even a belief that those who have gone before us are
rejoicing in Krystal’s rebirth, she’s not here with us. We sure would have
liked to have kept her a whole lot longer.

Some days are just sad, and the rain
keeps falling. There are no words.

Tuesday, December 16, 2014

Magnetic Resonance Imaging (MRI, to
most of us) is a way to use your own body composition to analyze what’s going
on inside you. A strong magnetic field aligns the hydrogen protons in your body
and then radio waves knock them out of their aligned position. I’m not ashamed
to admit that knowing my molecules are being messed with kind of gives me the
heebie-jeebies.

MRIs are a great diagnostic tool and
a way to detect cancer or the brain damage from dementia. When Jim had an MRI,
they had to sedate him because of his claustrophobia. In fact, during one test,
he pushed the panic button, and they took him out of the machine. It was the
results of an MRI that let us know that Jim had brain atrophy.

I recently had an MRI to determine
the cause of numbness in my fingers and pain in my arm. Based on the data
gained from the tests the neurologist ran, the culprit seemed to be in my
spine. The best way to look at it—an MRI. Surely, that couldn’t be as bad as
needles poked into me at random places.

This was my second MRI. The first
was about two years ago. I suffer from occasional bouts of vertigo that causes
severe vomiting for the first day or two. I can’t walk without help because I
feel like I’m on a ship caught in the middle of a hurricane. I went to the
emergency room, where they performed an MRI to rule out a brain tumor.
Thankfully, the MRI was negative—or as I described it to my family, “negatory”
on the brain.

I don’t remember much about that MRI
since I was a little out of it. It was a blur. I did remember the part about
not having any metal, so in preparation for the latest MRI, I carefully removed
my earrings and my rings before I left home. When I looked at my hands, I
noticed my glittery metallic nail polish. Could the polish have enough metal in
it to make a difference? I was unsure,
so to be on the safe side, I removed it. The bad thing was the ruby color came
off, but I could still see metallic sparkles on my nails. Suddenly, I became
obsessed with removing it. I did another round of polish remover, but the
sparkles just seemed to shine brighter.

Okay, now what? I have a super-duper
nail buffer that will remove anything. The trouble was, I wasn’t sure where to
find it. It wasn’t in the tray where I keep my polish and other nail
paraphernalia. So the hunt was on. Harold suggested it might be in my travel
bag. Sure enough there it was! With a good buffing, all the metallic glitter
was gone.

At the hospital I changed into a
gown and they got me as comfy as possible on the narrow hard bed as they
readied me to slide me in the tube. “What kind of music do you like?” the tech
asked me.

“Soft rock,” I replied. They plugged
my ears, put a thick cloth over my eyes, and placed the headphones on. They
placed a “panic button” in my hand in case I needed to get someone’s attention.

“Would you like a warm blanket?” she
asked.

“Sure,” I replied.

After I was all situated, they slid
me into the machine and the clanking began. I knew to hold perfectly still
because that was important. I forgot to ask how long it was going to take. I
thought maybe ten or fifteen minutes. I listened to song after song as the
machine clanked and hissed.

Suddenly, I noticed the hair on my
head seemed to be moving. Even my eyelashes were being pulled. I thought about
freaking out when my cheeks felt like they were being lifted, but I held out
pretty well until my nose started itching. It
can’t be much longer, I thought, as another song began. Just then, the
machine sounded different. Whew, must be
winding down. But no, it just seemed to start all over again.

Finally, by the time they pulled me
out, I had stopped being hopeful when the machine quieted down. I didn’t
realize I was out of the machine until they removed the headphones and took the
cloth off my eyes.

“How long did that take?” I asked.

“Oh, about twenty-five or thirty
minutes.” Sometimes it’s better if you don’t know how long something is going
to last.

And to make matters even better for
me, I never read about how my water molecules would be used to create a signal
that would be processed to form an image of my innards. The magnetic coils are
turned on and off which creates the noise of an MRI. The sound of the machine
can be equivalent to a jet engine at take-off, hence the ear protection.

I guess MRI’s are pretty miraculous
and it’s a whole lot better than the exploratory surgery they used to do to
find out what was going on inside. But still, it’s a pretty weird experience
and not one I’d want to do again soon.

Wednesday, December 10, 2014

For many years, I’ve been an
Alzheimer’s volunteer and advocate and have attended the annual Advocacy Forum
in Washington, D.C. for fourteen consecutive years. Because of my advocacy on
the national level, the Greater Missouri Chapter asked me to be an Alzheimer’s
Ambassador, to Congresswoman Vicky Hartzler and I gladly accepted.

Yesterday, I received an email from
Harry Johns, Alzheimer’s Association CEO, sharing good news about Alzheimer’s
legislation. Congress has incorporated the Alzheimer’s Accountability Act into
the Fiscal Year 2015 Omnibus Appropriations Bill. The proposed $25 million
increase in Alzheimer’s research demonstrates our legislators’ focus on finding
a cure for Alzheimer’s disease.

Why is the Accountability Act so
important? It will require the NIH to submit an annual budget to Congress and the
President. This budget will specify the necessary funding to reach our goal of
finding effective treatment or a cure by 2025.

The Accountability Act has been a
top priority for the Alzheimer’s Association and its sister organization,
Alzheimer’s Impact Movement (AIM). My sister, Roberta, and I joined 900 other
advocates to carry the message to Congress last spring during the Advocacy
Forum.

Harry Johns says the bipartisan
effort is a significant step toward winning the fight against Alzheimer’s. He
said, “It demonstrates that our relentless efforts working together across our
nationwide organization—including our dedicated Ambassadors and our hundreds of
thousands of advocates—to make ending Alzheimer’s a national priority are
making a real difference.”

Alzheimer’s is the most expensive
disease in America and the cost will skyrocket as the baby boomers age. In
2014, the cost of Alzheimer’s will reach $214 billion, including $150 billion
to Medicare and Medicaid. In contrast to the cost of the disease, only 0.25% of
this total is committed to research—our only hope to end this human and
financial crisis.

I have been fortunate to help in the
effort to increase research funding for a disease that affects more than five
million Americans and their families. We are gaining momentum and it is
imperative that we relentlessly advocate until this devastating disease is
eradicated.

Friday, December 5, 2014

The far-reaching scope of Alzheimer’s disease is
almost impossible to comprehend unless someone close to you develops the
disease. Once you have come face to face with this merciless foe, you recognize
the signs and symptoms even in complete strangers.

Several years ago I was at an
enormous craft festival when I bumped into a middle-aged man who had a lost
look in his eyes. In fact, he was
lost, and I instantly knew why. Before long, his brother found him. He saw me standing there and said, “My brother has Alzheimer’s.” I just nodded. He
knew that I knew.

Knowing and understanding
Alzheimer’s doesn’t have a lot to do with age. My grandchildren have always
understood the devastation and gaping hole that dementia leaves in its wake.
Some of their memories of their Grandpa Jim are hazy. Our youngest grandchild
knows his grandpa only from stories and pictures.

When one person has dementia, it
touches the entire family. My sister, sister-in-law, nieces, and grand-nieces
have been dedicated fundraisers for Alzheimer’s. We hold an annual traffic
stop, and we stand in the heat, rain, or whatever Mother Nature throws at us.
We smile, wave, and thank passersby as we collect for Jim’s Team.

One of the nieces that helps us fund raise each
year is Taylor. Recently, my niece Rachel shared a poem her daughter,
Taylor, had written about Alzheimer’s. The poem was originally published in Accolades, the student poetry
collection. Taylor gave me permission to share this poem on my blog.

Where’s My Memory?

by
Taylor Osman

Who
are you?

I
look and think.

Where’s
my memory?

I
should know you, but I don’t.

You’re
in my heart, but not my mind.

I see
and feel your warmth.

I
know you just for a split second.

Wait,
the thought is gone.

Who
are you?

Where’s
my memory?

Why
is it like this?

A
tear runs down my cheek.

What
is this for?

I
have to know, but I just don’t.

Remind
me again, who are you?

Where’s
my memory?

My
memory is fading away.

I
have it one minute, but then it’s gone.

Where
is my memory?

Dedicated to all the people battling
Alzheimer’s

So what is it exactly that makes
some people understand Alzheimer’s when others never seem to get it? Taylor
gives us the key to understanding in the lines, “You’re in my heart, but not my
mind. I see and feel your warmth.”

When you understand that the heart
will remember what the mind forgets, you realize how important it is to spend
quality time with your loved ones who have dementia or Alzheimer’s. Your warmth
and hugs express your love even when your loved one does not remember your name,
or understand your words. Those
split-second moments of clarity when you open your heart are far too precious
to miss.

Copyright (c) December 2014 by L.S.
Fisher

http://earlyonset.blogspot.com

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This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

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I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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